Sunday, April 27, 2008

I am the crazy lady who comes up to you and wants to talk about your disabled child. Or if you are disabled, I chat your ear off... asking a million questions. I am sorry if I freak you out. I'm just looking for some reassurance and guidance on this crazy ride.

Over the past few months, I had noticed a man who grocery shops at the same store I go to. He is in a wheelchair and seems to have CP involving all four limbs. The first time I saw him, I was so happy to see such a well functioning adult with Quad CP- he is a great driver and also speaks well. Such a relief to see as a Mom.

So over the past several weeks, I have been building the courage to speak to him. I am always so worried that I will offend someone when I approach with a head full of questions. But this past Tuesday, I got over my nervousness and approached him. And, wow, I'm glad I did.

Cory is an LSU alumnist who serves on the City Council for the Disabled here. He knows all the best doctors and treatments in our area. The depth of his knowledge is remarkable. Some of his personal story is heartbreaking since he now has complete hip dysplasia due to not receiving services at a young enough age to slow down his hip deterioration. But he is doing so well. It eases the worry in my Mama heart.

Sometime soon he and William will meet. And William will have another very valuable player on his side.

Thursday, April 24, 2008

This winter was rough. Our rolling illnesses continued, culminating in a GI bug that wiped our entire house out. Since then, knock on wood, we have been relatively well! A full three weeks now. Of course, Margaret has her ever-present sinus infection and William is gagging on his reflux but nothing big to slow them down any.

Our biggest even of late was Margaret's transition meeting. See, my "baby" will be three this summer and she won't be eligible for free Early Intervention services through the state anymore. So, if a child needs services, the parents can have the child evaluated by the public school system. If they qualify, the school system will provide services after the age of three.

The meeting was yesterday morning. Margaret was in a mood... I think hungry. And there were six or seven people in the room all trying to get her to do things. I can't believe she didn't shut completely down. Why do they think that having so many people in the same room with a 2.5yo is conducive to evaluating how they behave normally? Despite all the "issues" I had with how the eval was handled, she performed pretty well- did as well as she does at home. When we first got there, though, she immediately zeroed in on an alphabet sign they had taped to a door. Of course, in her two year old brain, that meant there were LETTERS behind that door! Lots of whining and crying to open the door. Finally, I told her it was a bathroom (really don't know). She looked at me as if I had just sprouted another head (because that just doesn't make sense, Mommy!) and stopped trying to open the door.

Despite my concerns over her obsession with letters, her ability to read some words, and her social/sensory challenges, she didn't qualify for services. I'm not sure if I am scared or excited. The thought of her not getting OT for her sensory challenges gives me a mini panic attack. But how much of that is just because I feel comfort in having another set of eyes on my daughter? I don't know. I'll mention it to her OT and see if she thinks M is ready to go it alone.

The social worker who was there called me "relaxed". Ha! That is just what happens when I am overwhelmed. I think "nervous" and "frantic" better describes my usual state of mind.

At the very least, this meeting was a good dry run for William's meeting in a year or so.

Speaking of, my boy is growing like a weed! He has to be 25-28 pounds by now and I have thrown my back out twice already hauling him around. He and Margaret wear the same size shirts and diapers. Margaret's legs are about twice as long as William's, though.

William has been eating pureed food for a while now and is doing well with the stage 2 foods. I tried blending up some of our table food to give him but he hated it! I guess the texture is just not as smooth. Poor fella was spitting and gagging. It will be a while before I try that again. He does pretty well gnawing on cookies, though.... hmmm.... Methinks he doesn't like my cooking. Still, I am really nervous about moving on to stage 3. Will all M's former eating difficulties, I guess I'm just a bit gun shy.

Also, my Mister got some glasses! At his last Ophthalmologist appointment the doctor noticed that his eyes are crossing a bit more. So we are trying glasses to see if that helps him. So far it is hard to tell if they are doing anything. We still have six weeks left of this "trial" and if the glasses don't help, we will move on to patching. He's gonna love that. HA! I do say that he looks so stinking cute in them, though. So I hope we get to keep them!

We have put all plans to go to China for stem cell treatment on hold. A month ago, I was ready to go for their SC treatment of optic nerve hypoplasia. After a discussion with his eye doc, I have changed my mind. She said that since William's ONH is not a "clear cut" case, she feels that he would not get the benefit that many of the children who go seem to have. William's eyes have more healthy tissue than most kids with ONH so she feels his vision issues are more from his Cortical Vision Impairment. We haven't thrown China plans completely out the window. There is still a chance that we may go for (so called) CP treatment. But, for now, it is not an active topic of discussion anymore.

I have a lot to catch up with here but I won't do it in this one post. I post again, soon. Promise.